Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study

Abstract

Objective: Supportive care needs in glioma patients often remain unrecognized, and optimization in assessment is required. First, we aimed at assessing the support needed using a simple structured questionnaire. Second, we investigated the psychosocial burden and support requested from caregivers.Methods: Patients were assessed at three centers during their outpatient visits. They completed the Distress Thermometer (DT; score ≥ 6 indicated significant burden in brain tumor patients), the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ)-C30+BN20, and the Patients' Perspective Questionnaire (PPQ) that assessed psychosocial distress as well as support requested and received by patients for specific domains (e.g., family, doctor, and mobile care). In each subgroup, patients' caregivers were assessed simultaneously by a questionnaire developed for the study. Multivariate backward logistic regressions were performed for investigating predictors of patients' request for support.Results: Assessments were conducted for 232 patients. Most patients (82%) had a high-grade glioma and a mean age of 52 years (range 20–87). The male to female ratio was 1.25:1. According to the PPQ results, 38% (87) of the patients felt depressed; 44% (103), anxious; and 39% (91), tense/nervous. Desired support was highest from doctors (59%) and psychologists (19%). A general request for support was associated with lower global health status (p = 0.03, odds ratio (OR) = 0.96, 95% CI: 0.92–0.99) according to EORTC QLQ-C30. Most of the assessed caregivers (n = 96) were life partners (64%; n = 61) who experienced higher distress than the corresponding patients (caregivers: 6.5 ± 2.5 vs. patients: 5.3 ± 2.4). When patients were on chemotherapy, caregivers indicated DT ≥ 6 significantly more frequently than patients themselves (p = 0.02).Conclusion: Our data showed that glioma patients and their caregivers were both highly burdened. The PPQ allowed us to evaluate the psychosocial support requested and perceived by patients, detect supportive care needs, and provide information at a glance. Patients in poorer clinical condition are at risk of having unmet needs. The caregivers' burden and unmet needs are not congruent with the patients' need for support. In particular, caregivers of patients on chemotherapy were more highly burdened than patients themselves.

Health-related quality of life and distress in elderly vs. younger patients with high-grade glioma—results of a multicenter study

“…From March 2014 to October 2014 as well as April 2015 to June 2016, we conducted two prospective studies assessing HRQoL, distress, and supportive care needs in glioma patients. Patients at four German neuro-oncological centers were approached during their outpatient visits and asked to participate in the study as previously described [ 18 – 20 ]. Inclusion criteria data analysis was a diagnosis of glioma WHO grades III–IV regardless of disease stage (initial diagnosis or recurrent disease), absence of aphasia impairing communication or consent to the study, and given informed consent.…”

Development of screening questions for doctor–patient consultation assessing the quality of life and psychosocial burden of glioma patients: an explorative study

“…Glioma patients in unfavorable clinical conditions are at risk of having unmet needs [ 12 ]. Against the background that not all patients who are distressed wish to receive support and vice versa, assessing unmet needs additionally to distress screening could give information on their need of support [ 13 ].…”

Effect of early palliative care for patients with glioblastoma (EPCOG): a randomised phase III clinical trial protocol

“…It can be regarded as a model for a rapidly progressive cancer with a wide range of fast-developing, life-changing symptoms encompassing neurological, psychological, psychiatric symptoms, as well as unpredictable personality changes, leading to loss of autonomy 1–8. The burden is mainly related to the psychosocial dimension in contrast to other advanced cancer entities 9–11…”

“…However, there are no data about the effect of EIPC in patients with GBM and they are less likely to receive PC than other cancer patients 1 24. Their disease-specific needs are probably not met by a ‘one-size-fits-all’ generic PC approach as they suffer from unique, serious, fast-developing, neuropsychiatric life-changing symptoms with a high caregiver burden1–11 as also shown in own studies 1–3 7. Therefore, this study aims to evaluate whether EIPC is efficacious (1) in a patient group with very different needs, (2) in medical disciplines not very experienced in PC yet, such as neurosurgery/neuro-oncology and (3) within the practicability of the German healthcare system.…”

“…What justifies a confirmatory clinical trial at this time point? Following the Medical Research Council (UK)in its current version from 2008,28 we believe that the development phase of our complex intervention can be based on numerous studies including own modelling work identifying the specific needs of GBM patients and their caregivers1–11 and also the efficacy of EIPC 12–18. A potential intervention for GBM patients can be modelled on this existing evidence and our clinical experience.…”